The Acute Lymphoblastic Leukaemia Diary

Sunday, 2 March 2014

It's been a while, mainly because I am trying my hardest to get us all back on track after what was the most horrific three years we've had to go through as a family.It's been nearly a year since daughter finished chemo and she is gradually getting stronger and happier. I am busy and I may not be on forums regularly now, but I am still here. If anyone does need to ask anything or just wants an ear for difficult times, I will always make time for you.

I started a new job in January and it is relentless, but much happier than my last one. I promise to update properly soon.

Monday, 8 April 2013

I know that a few people read this. If you are ever here looking for information about anything or for a particular experience of something, just leave a comment. Even if I can't help, I might know people who can.

So we have just over a week of chemo tablets to go.Daughter had her final spinal chemotherapy and bone marrow last week. We haven't heard back from the bone marrow, which is a good sign.We have to have a meeting with our consultant to talk through what happens next, though I'm aware she will remain a patient for at least 6 months.I'm starting to actually look forward to our holiday now, even though I still have to try and find some travel insurance for us to go. We have certainly earned it.These past few years have been really, really tough.

Wednesday, 27 March 2013

Today she has her final spinal chemotherapy and bone marrow aspiration to make sure the leukaemia is definitely gone.I see no sign of the disease now, although we are all a little nervous still I think.She has another month of chemo tablets to take, then she's finished. Next, we attend a big meeting about what happens in the future. I know that for the next six months, she will still be considered very low immunity and be under the care of hospital.I will be very glad to see the back of chemo, but also very thankful that it has saved my daughter's life.

Thursday, 14 February 2013

We are on a 10 week countdown to the end of treatment.Keep everything crossed that her final bone marrow will show that she is finally clear of leukaemia.I am very much back at work at the moment, hence my lack of posts.

Sunday, 13 January 2013

Daughter was diagnosed with Influenza B on Monday, which did explain why she was feeling so shocking. However, she was a bit miffed that she'd had to have a flu jab that didn't work.She came out of hospital on Wednesday, but she had to go with her Dad so that I could work. I've not seen her since, but she is apparently still feeling very, very tired. I suspect it will be a long time until she feels more normal. It will not help that she is due to have vincristine and have blood taken off her this week, which I think will really wipe her out.I'm struggling with all of the things that I have to do. There seems to be so little time and life is relentless. I could sleep for a month!Trying to run a house and family, work full time and deal with a child with cancer really takes it out of you.Oh, for a fortnight in the sun. By myself. ;-)

Tuesday, 8 January 2013

We have a diagnosis then.It's amazing - as soon as they said flu, it all fit into place. We just didn't look for it as she'd had the flu jab. She's through the worst now, but she's still in hospital for another day so they can make absolutely sure that her temperature stays constant. Then she will go with her dad. She's so weak, and I think it will be some time before she's more normal. This will not be helped by the IV chemo that she is due to have next Thursday.I am feeling so fed up for her, and for us as a family.I am wishing with all my might for a windfall so that I could take some time away from work and care for her, rather then shipping her off to her dad's because I've missed too much time and I can't afford to take more.I am feeling run down, tired to my bones and like a dreadful excuse for a parent and employee today. Once again, I can do no right.:-(